Community Chat

[Montana]

A vlogger I watch has spinal muscular atrophy. He is an adult.  The YouTube channel is Squirmy and Grubs.

He talks about the new treatment here:

https://m.youtube.com/watch?v=bMm3AQcT3EQ

”BREAKING NEWS: NEW TREATMENT FOR MY DISEASE APPROVED”

[Ms tyrion2]

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@Ruby Laine wrote:

There are several drug assistance programs to which patients can apply. Many drugs can be supplied at no cost to the patient. The physician should know which programs can help most for a certain med. 

Even when drugs are FDA approved, they might still be involved in clinical trials which helps, too.

I have a friend who receives a fairly new drug at no cost through an assistance program. Otherwise, it would cost $75,000 each year. There’s no insurance available that would cover it. 

Hopefully, this is a drug that could be covered by one of these programs. 

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Two of the drugs I take for cancer treatment are covered by co-pay assistance plans with the manufacturers. If I didnt get this assistance,  I would not be able to afford these treatments and I would probably not be here typing this post.

[wakefield64]

Yes as usual, the FDA  is looking out for us. Wonder how much money changes hands between them and Big Pharma.

[wakefield64]

Spoiler

I read somewhere that there is a proposed bill to show pricing on all prescription drug ads. I thing someone else mentioned this but the US is the only or one of the only countries that allows drugs to be advertised to the consumer. I personally strongly believe that this is not right. But with the power that drug companies have, probably will not happen.

[Spurt]

@PamfromCT and ALL....

Here's some examples and thoughts to chew on about the Pharmaucuetical companies....And just makes me wonder about the real cost to manufacturer that 2mill drug....I wonder if Europe offers something at a cheaper price????? 

I'm just cynical about the Pharmy industry...I've heard panel discussions involving all sides, heard news stories, read articles and researched...mostly because my sister cant afford a drug that is the only remedy that works for a health ailment she has...Here's the tip of the iceberg....

There is a new drug researchers developed in Israel that looks like a real breakthrough for treatment of cancer, The reasearch company said they dont even want to make money on this drug, they just want to help people....yet U.S. Pharmy companies wont even test it here because truth be told, they'd lose money on many other drugs that they manufacturer ...........

The Super Bug that's out there that doesn't respond to antibiotics...A doctor was interviewed saying Pharmy companies won't help, not enough money in it....despite thousands that will die....He uses unconventional methods to try to treat it that he's sharing with other doctors.....

And it was the Pharmy Lobbying Group, a very powerful group, that shut down legislation that would've stopped the Opioid crisis long ago, now look where the Opioid crisis is today.....

Of course we all know about the Epi Pen.....

Europe sells an OTC that basically removes arthritis pain, but U.S. Pharmy companies won't allow it here...would hurt their business...

Änd of course Pharmy ads that advertise the drugs that are the most expensive despite cheaper options being available with less side effects....

[SeaMaiden]

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@esmerelda wrote:

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@SeaMaiden wrote:

Only the rich survive....the top 1%

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@SeaMaiden  They have to.  Without them, the bottom 44% wouldn't.

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@esmerelda     I think we would do BETTER.

[Lion]

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@chrystaltree wrote:

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@SeaMaiden wrote:

Only the rich survive....the top 1%

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      As expensive as Spinraza is most, if not all, insurers cover it.  It's miracle drug that is relatively new.    The condition is extremely rare and Spinraza is proven to be an effective treatment for SMA.  If the manufacturer can't get insurers, hospitals and parents interested in this megabucks new unproven drug;  they won't be able to sell it.

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Insurance would only cover it  *if*  the family has health insurance.    And only if the insurance company accepts pre-existing conditions.

This would be a good example of when the very rich could get together  and form a charity/non-profit to help the 400 U.S. families with cost of this medicine.    If enough got involved, the amount they'd each  donate wouldn't harm them financially at all.    Of course, they could accept donations from everyone else as well. 

[Lion]

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@bathina wrote:
The problem is that drugs that help only a tiny percentage of the population would never be profitable if the price tag wasn't hefty. This is the price we pay (pun intended) for profit making companies on which human life now relies.
It costs millions and millions for R&D and getting the drug to market. If only 400 people a year need the drug, it makes sense the price will be high.

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If they sold just one year's supply to the 400 U.S. families that need it, that would mean $1 billion sold.    That would definitely go beyond covering their R&D costs.     Seems they could reduce the charges considerably after recouping  R&D and still make a good profit.

[Spurt]

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@wakefield64 wrote:

Spoiler

I read somewhere that there is a proposed bill to show pricing on all prescription drug ads. I thing someone else mentioned this but the US is the only or oZne of the only countries that allows drugs to be advertised to the consumer. I personally strongly believe that this is not right. But with the power that drug companies have, probably will not happen.

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@wakefield64 

The U.S. and New Zealand are the only 2 in the world that allow it....